Morse code anyone?

I was lying there wishing with all my heart that I had paid attention to those stupid things they tried to teach us when I was a girl guide, not once since then had I even thought about understanding Morse code, but last night, I really wished I had. I have put up with Tinnitus for years, living with the wildest mix of sounds that anyone could imagine, from road drills to high pitched squeals and on through white noise and blue bottles living in my head, but as far as I can remember last night was the first time I had found myself listening to Morse code. It was identical to what you would expect to hear on an old black and white cowboy or war movie, distinct dots and dashes that sound totally random yet you know mean something. I am sure if I did understand, what I would have translated would have been nothing more than total jibberish but it was there and so convincing that I was angry for wasting the one opportunity I ever had of learning it. Recently, I have developed a new habit, I’m not sure if it is a good or a bad one, but what it is, is an interesting one. Anytime I find myself locked on to some symptom or another, I now go straight to Google and type in “MS….” followed by whatever it is, I used to do it years ago only to draw a total blank after blank, building up not the knowledge I was seeking but just more frustration at a so-called information highway that told me nothing.

When I was first diagnosed, in fact, to be totally honest for several years before that, I had been trawling the net looking for answers and very rarely finding anything. The sites I found about MS in those days were totally sparse as to what they had to say, I think there was a general code that medical information was kept to the totally provable and totally clear cut, which, of course, meant that subjects like MS and Fibro were all too often just a footnote. I already was overly aware of the main symptoms, but I was searching for the reason for all the other things that were happening to my body and I was finding no help with anywhere. I became so convinced by what I read that the other symptoms I was experiencing couldn’t be anything to do with the already known conditions, that I went back to trying to find out what else might be happening. I held tightly to the fact that my GP had said to me at one point, “not everything is down to your MS.”, what I forgot to hold onto was his other statement, “I have never had a patient with MS before, so we will be learning together.” Over the past 14 years, the internet has totally changed and the information out there now is amazing. I remember writing a post about the horrid nausea that I had been suffering with for years and I suddenly started getting messages on Twitter telling me that it was very much part of my PRMS. I had undergone treatments so server that I even landed up on a gastric nasal tube because no one could work out why I couldn’t eat without wanting to throw up, there it was, in black and white, nausea is part of MS and I had been put through hell for no reason. Not the treatment, that was needed, but by once again being made to feel like I was a liar and for some odd reason I was making the whole thing up, I knew I wasn’t, but the doctors didn’t seem to. I was so surprised by what I found that I started to check other things and yes they too could quite easily be down to my PRMS as well, it quickly became a new part of my life that with each symptom I wasn’t sure about, I checked it online and more and more slotted into place.

For years now I have been blaming myself for my Tinnitus, all those years working as a DJ and spend more time than was good for me to around live bands, latterly loads of Thrash and Death Metal ones, well it’s bound to have an effect and Tinnitus seemed like a fair swap. Something triggered me to just check this one too, to see if there were any links there at all or if my conclusions were a 100% correct, I was shocked to find that yet again, this is another thing that could be caused my PRMS. I still think that the likely hood is that my working as a DJ is the most likely explanation, yet here I am again looking at something that in the past I would never have had anyone tell me might have two possibilities or even an explanation at all. To date, I have always been overcareful when it comes to what I find online for a lot of reasons. I honestly believe that self-diagnosis is a dangerous thing and a road to be avoided at all times, but I am also realising that once you have a diagnosed condition that we still have to take the initiative and stay on top of what information is available, regardless how many doctors roll their eyes or snigger when you mention that you have read something online. The more I am finding out, from both the official sites about MS and through discussion boards the more I feel I have been treated really quite badly at times, simply because of the lack of knowledge from people within the NHS who don’t specialise in treatment of MS. If my doctor had known that nausea was part of my condition, I would never have been sent to gastro when I found eating almost impossible and when gastro couldn’t figure it out, I wouldn’t have been sent to see a shrink, who surprise, surprise, couldn’t work it out either. It was me who eventually found the fix by accident, remove the excess stress, my PRMS settled down a little and I was once again able to eat again, if only little and often.

It is hard to know just how much of our health we have to investigate for ourselves and how much we have to leave in the hands of our doctors. I know the doctors would prefer that we just sat back and left it to them, but no doctor can know everything and I am totally sure that they all too often find themselves facing a patient who is as far out of their comfort zone as any knowledge of Morse code could have translated what I was listening to last night. I for one am now going to be much bolder when sitting there describing what is happening to me and not shy away from explaining what I have discovered, what I need to do more though is not tell them how I know and just make it sound as though it is something everyone with PRMS knows. Maybe bravado even has a place in the consulting room as much as it does in any other situation awkward situation we find ourselves in.

Read my blog from 2 years ago today – 19/04/13 – Changing your mind >

That silly headache is still around, it’s intensity has reduced but it isn’t happy to leave yet, this dull ache is actually in itself draining, it makes you want to curl up and do nothing although that isn’t going to help at all. There are many days that I feel that way, that just lying there curled up in the dark, warm and safe

Damage done

I was woken this morning once again by pain, but this time not in my stomach, but around my ribs. Once again, it was the razor blade like pain that woke me, it is so sharp and so grinding that there is no way of ignoring it for a second and like the majority of the pain in my torso, always worse when lying down. Just to add to the mix, Adam was happily snoring beside me, but I know it wasn’t him that woke me, it was the pain, as that was all I noticed until I was fully awake when the sound started to filter into my brain. I am still not totally used to him being there, what I do know is that should I wake during the night for anything, the first thing I do is check that he is there. I find myself reaching across the bed until my pinky touches his skin and then I go back to sleep, content to know he isn’t still through in the living room, hunched over his laptop or asleep on the floor. When I woke I found myself with the quandary I have had every morning since he returned to sleeping in our bed, do I use the mattress lift or not? I find myself lying there for a few seconds, trying to work out what my muscles will take or not, can I manage to get myself from flat out to sitting, or am I going to have to press that little button and risk waking him? He has told me not to even think about it, if I need it well use it, but inside I still fight with myself about it, this morning I had little choice, with the pain in my ribs slicing through me when just taking a breath, well the chance of no pain on pulling myself off the bed, was slim. I took out my earplugs and removed my sleep mask before touching the button as I wanted to be able to react quickly should he react at all, he didn’t, but neither did I raise the mattress as high as I might have, just enough that when I pulled on my stomach muscles they felt as though I could manage the rest. It isn’t just that he has told me not to worry about it, but also the fact that he can sleep right through a full minute of the alarm clock sounding, that should tell me I have nothing to worry about, if he can sleep through that, well he can sleep through the bed moving slightly, but I guess my need to care is one thing that hasn’t changed inside me.

The pain I had in my stomach all day yesterday seems to have calmed down overnight, it wasn’t the terrible pain that I have had for the last week or so, but it was constant and constant can in many ways be worse. The pain has settled, but nothing else has happened at all, I forgot when I was talking to the doctor to ask how long I should give his medication plan to work before upping it to the next level. Tonight will complete a full 48hrs passed without any change and as I know without a doubt that there is rather a lot waiting to go, I suppose I should raise the dosage tonight and give that 48hrs and so on, if there is still nothing, well I will phone him then, I just hope that I don’t have to. It doesn’t matter how long I have been ill, I still have the stupid fear that my body is playing tricks on me and that the doctors from years ago who wouldn’t help me in any way were right. I find myself scared almost that this plan will work today and that I will go to the loo, that may sound nuts as that is the one thing I would love to happen, but you see if this works at this level, it would sort of confirm that I am worried about nothing and creating it in my head. That idea started years ago, when unbeknown to me I had RRMS, my GP would send me to the hospital as he couldn’t work it out, but by the time I got an appointment I was back in remission, so they found nothing and told me I was fine. I went home feeling as well as I did when I went there, but with a flea in my ear regards wasting their time. Months later, it would happen all over again and I was caught in this mess of being ill and with no one believing me and so it went on. It is so ingrained in my head, that I know without a doubt that when it comes to talking to doctors, well I have learned to downplay everything as I don’t want to be left looking stupid and when they do prescribe something for me with confident words that what they have prescribed will work, when I know inside it won’t, I still fear they may be right.

33 years of working out for myself what works and what doesn’t, doesn’t stand for anything, when you have this little worm of doubt that was planted so long ago, still wriggling and twisting around in your mind. For 20 years I dealt with all the problems that RRMS throw at me by myself and when it changed to PRMS, suddenly I had the medical profession behind me and they have managed to help me so much, but they can’t undo what they did. I am totally sure right up to my dying day that I will be saying, no don’t call the doctor, not because I don’t need help, but because I will be scared that I might just be wasting their time. All the logic in the world can’t undo a single second of something that is so deeply engrained in your mind. Oddly I find it easier to forgive and forget the things that happened to me in my childhood, than I do to get past what doctors did to me as an adult. I can only assume that that is because I was an adult and it was the so-called caring profession that managed to get things so wrong. It isn’t so much the misdiagnosis that still annoys me as the way I was treated and what that has done to me in the following years. I am sure that if I hadn’t been left feeling like I was a nuisance, that I wouldn’t have lived as long as I have in as much pain as I have been in. It is odd how someone who clearly has a logical thought pattern and the ability to work things out for themselves, just can’t undo one small thing and put it where it belongs, not in my brain.

I won’t be alone in this position, if there is one thing that being part of a huge community of people living with chronic illness had taught me is, none of us are the only ones, there are always others going through exactly what you are, at the exact same time. Maybe the day will come when this will end, if it does I am sure it will be brought about when diagnosis is taken out of the hands of humans and is done by a machine that can see everything and removes human error. I hate to say this, but when that day comes, I believe the numbers of us will rise hugely as all those who are struggling alone because they don’t want to be made to feel like a waste of space, a liar or an idiot, will actually get the diagnosis they know without a doubt, is just waiting to happen and no one after that point will ever have to wait again.



Please read my blog from 2 years ago today – 07/02/13 – Body Check Match

I have just read through “Body Check” and “Body Check 2”, clearly the style I chose to write them both was different, but I made the decision to not read the first before I wrote the second as I felt that way I would be able to write as is without the first in mind….